from the time I was little I would brag about my badass immune system. I was the healthiest kid ever minus a few kid bouts of strep. When I got sick I knew something wasn’t right.
I’ll take you back to 2002 when I was fifteen and it became imperative that I get “in shape.” Maybe it was peer pressure, boys, or the developing girls, but all I know is I wanted to be able to look good and not breath heavily while walking up a flight of stairs.
I had just bought some new sneakers, this is step 1 for starting a new workout regimen because this is the magic that creates motivation. I put those pups on and got my butt in gear. Now- I will be honest. I definitely ran under 1 mile. I attributed this to the lack of sidewalks and the rolling hills of upstate New York. Hey, it was day 1, day 2 would bring better results. Right? Wrong.
The following morning I woke up in agony. My legs ached, my arms ached, my face ached. I just assumed, man… I am really out of shape. Fortunately, my mother is a nagger, and I mean that with love. She was my biggest advocate and for that I am so lucky because I know not all people have their own nagger. You need someone to look you in the face and say, no, something isn’t right here. And for that, thank you, thank you, thanks to my mother who dragged me to every single doctors appointment.
The road to a diagnosis was not a quick one, but in the scheme of lupus it was- I was diagnosed within 1 year. Within that year came multiple doctors and multiple diagnoses (none of which do I actually have). First I “had” a thyroid condition, then I “had” rheumatoid arthritis, eventually I would be told it was lupus. In order to be diagnosed with lupus you need to fit into a certain checklist because there is not a single distinguishing feature of lupus. The indecisiveness of the diagnosis is probably what makes me a complete idiot with this disease sometimes. I will be truthful with you now and say, I have not always been the best lupus patient. I have forgotten to take my medicine, I have lowered how many pills I take because I don’t think I need them, I have skipped eye exams that I have to go to because the medicine I take has side effects that can damage my vision permanently. Why do I do these moronic things you ask? I don’t entirely know. I often imagined that it is some big mistake and that I don’t have lupus. Well the truth is, I have lupus. I’m beginning to embrace that I do. And I can still live.
I created this blog for a few reasons. One reason is because of the confusion and fear that I faced when going through the initial years of this disease. I felt abnormal, angry, upset, different, I asked “why me” like I was the only person in the whole world with any problems. This was in a pre-facebook pre-blog crazy world, and I felt alone. If I can create hope and an outlet for one person I will be happy. I am finding my way through this disease and as I sit here writing I’m thinking, time to take my medicine.
My rheumie (rheumotologist) and I have a real love hate relationship. He yells at me and I promise to be better. Yesterday I had a followup appointment. He told me I’m doing great. I asked him a ton of questions about running and working out and bikram yoga. He said, “you can do anything. live your life. wear sunblock. seriously, go put on your sunblock.”